Recent research indicates that Lyme disease is actually 10 times more common than was first thought. How can the actual number be so much higher than the reported number?

The issue is that diagnosing Lyme disease is notoriously difficult. Lyme disease test results often aren’t accurate. It’s also difficult to recognize the symptoms of this disease. There are all different kinds of symptoms, and it sometimes takes many years before they can be traced back to the real cause.

Wondering if you might have Lyme disease? Let’s take a close look at how these tests work, why they’re often inaccurate, and how to know if you really have Lyme disease.

What Is Lyme Disease?

Lyme disease is a bacterial infection that you can get from tick bites. Two kinds of ticks spread this disease: black-legged ticks and young deer ticks. Understanding more about ticks provides useful information about whether you might be at risk for Lyme disease.

Many people associate ticks with the eastern United States. But while they’re most commonly found there, they’re also located all across the country. Anytime you spend time outside, especially in tall grass or woods, you’re at risk of a tick bite.

Ticks are good at going unnoticed, so you might not even realize that you’ve been bitten. This is the first reason Lyme disease is hard to diagnose: people often don’t realize that they might need to get tested.

How Is Lyme Disease Transmitted?

First, the tick gets infected with the bacteria called Borrelia burgdorferi. Then, the tick has to attach itself to a person and stay attached long enough for the infection to get transmitted to a new host.

Not all tick bites can transmit Lyme. Experts believe that the tick needs to stay attached for at least a full day, up to 48 hours, before they can pass Lyme disease along.

It might sound surprising that a tick could stay unnoticed for so long. However, they often bite in hidden places, such as the crook of the knee or armpit. Also, young ticks tend to transmit the disease more often, because they’re smaller and harder to see.

Lyme Disease Symptoms

Diagnosing Lyme disease proves challenging because the symptoms mimic the symptoms of many other illnesses.

At first, the symptoms might just feel like the flu. Some of the first signs of Lyme disease include muscle aches, sweating, and fever.

The only distinctive early sign of the disease is a rash shaped like a bullseye around the bite. However, the rash isn’t present in all cases, and it can also appear in a hidden part of the body where it goes unnoticed.

When the early signs of Lyme disease aren’t caught and treated, the disease often progresses into chronic Lyme disease. Chronic Lyme has an incredibly long list of symptoms, which vary depending on which body parts are most affected as the bacterium travels.

People with chronic Lyme might experience neurological issues, sleep problems, muscle and joint pain, mood disorders, and more. These symptoms overlap with a laundry list of other diseases and disorders, from MS to depression. Many people get incorrectly diagnosed, sometimes many times, before realizing that they actually have Lyme disease.

Diagnosing Lyme Disease

There are two primary tests for Lyme disease. First, there’s the Enzyme-linked immunosorbent assay (ELISA) test. This test looks for antibodies to the Lyme bacteria.

If that test comes out positive, the next round of testing involves a Western blot test. What does a Western blot test tell you? Mainly, it also looks for antibodies to the same bacteria. However, it uses a slightly different method of testing for those antibodies, so it can help confirm or deny what the ELISA test showed.

Basically, the ELISA test looks at the activity of your immune system to see if it might be responding to Lyme disease. If Lyme disease is present, your body will be making antibodies to fight it.

The Western blot test works by comparing the patterns of protein in your blood (protein is part of your body’s immune response). The protein patterns tend to appear one way in people without Lyme, and another way in people with the disease.

Why Diagnosis of Lyme Disease Isn’t Accurate

The ELISA test doesn’t always show up positive when Lyme disease is present. But it often also gives a false positive result. So whether the ELISA test shows up positive or negative, you can’t rely on what it says.

That’s why doctors also give the Western blot test. With the two tests, the accuracy is much greater. If you’ve only had one type of test done for Lyme disease, you don’t have the full picture yet.

Diagnosing Lyme disease based on the symptoms alone can prove nearly impossible. However, if you have symptoms and can’t seem to figure out the cause, you should get tested to rule out Lyme disease.

Could You Have Lyme Disease?

Some people contract Lyme disease without ever realizing it. In fact, most people with Lyme disease won’t know they have it right away. And in many cases, the body fights it off before it can become chronic.

However, chronic Lyme disease can transform into a serious and debilitating issue. If you have inexplicable health problems, and have spent time in areas where ticks thrive in the past, you should definitely get tested.

Even with the two-step test, though, false positives and negatives can still occur. Schedule an appointment with an infectious disease specialist for your best chance at getting to the true diagnosis.

Take Your Health Into Your Hands

Diagnosing Lyme disease isn’t easy, and you can’t always count on your regular doctor to do it. You might need to schedule an appointment with a specialist, or insist that you get the tests you think you need.

Staying in better shape can help you manage chronic Lyme disease symptoms. If you suspect you have Lyme disease, check out this guide to short exercises that will keep your body in peak condition.